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adkmom

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Posts posted by adkmom

  1. Massachusetts Legislature report released

    in PANS / PANDAS (Lyme included)

    Posted

    thanks Kara. Can I post on our facebook page: Children's Lyme Disease Network?

     

     

    My husband handed this to me last night (he's a state rep). I haven't read it yet. It's about 36 pages. But is includes, among other things, recommendations to establish a commision of experts to propose solutions for the state, to mandate insurance coverage for long term treatment, to fund educational outreach.

     

     

    http://www.telegram..../WT17491430.PDF

     

     

    Hope this goes somewhere...

  3. Lyme and children in Newsday!

    in PANS / PANDAS (Lyme included)

    Posted

    I'm happy to report that the Times Union article covering Lyme and children was picked up and ran in Newsday today! nearly 1 million readers.

     

    To view stories, I'm posting on a new facebook page...if interested in sharing.

     

    http://www.facebook.com/home.php#!/pages/Childrens-Lyme-Disease-Network/152988478090696

     

    PS - The feedback has been amazing...so many people are really enraged that their kids are going through this. And most, don't have the support that we've found here. And the kids themselves really seem to want to be advocates and raise awareness....several have asked about how to start Lyme awareness programs in their schools.

  4. sorry...how to you clear your mailbox?

    in PANS / PANDAS (Lyme included)

    Posted

    thanks!

     

    sorry for such a silly question. But, i deleted messages in my box but am being told it's still full. Anything else I need to do? Sorry again. Haaaa.

    Did you try 'folder' upper left of screen.

    click on 'conversations'

    click on 'edit'

    click on 'trash can' to the right of folder (empties entire folder of conversations)

     

    Also,

     

    Bottom right of screen

    click on arrow (left of 'Go')

    and put on 'delete')

    click on box to far right of each message you want to delete

    click on 'GO' button at far right bottom of screen

     

    Hope one of these works.

  8. Anyone using ADHD meds

    in PANS / PANDAS (Lyme included)

    Posted

    Our pediatrician suggested "investigating" ADHD and treatment for those symptoms even though we're still treating for Lyme/Bartonella/Pandas. My son's lingering symptoms are: ADD stuff, some aggression/anger and emotional lability. Intermittent fatigue. Does anyone use those meds while treating for the Lyme? Don't want to mask any symptoms and don't want him on ADD stuff forever....But I feel bad that he can't participate in any activities because of ADD, so now wondering if those meds would be good to add in.

     

     

    How do we know the antibiotics aren't causing all the fatigue? Or is it a symptom of the Lyme? Anyone? My little guy is so tired easily.

  9. Positive Update

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks for the update. Needed a boost of hope as well. Took DS4 to the pediatrician and he was a total mess, back to the beginning: kicking me, calling me names, not sitting still, rolling on the floor, grabbing at things. I was mortified! And this following an article saying how great he was doing! Ahhhhh! Anyways, we went into appt. with a throat clearing symptom re-emerging. I ignored it, had the terrible visit and then the tic became worse the rest of the day. So, clearly something wasn't right. Not sure what triggered all this but hoping it passes.

     

    I was SOOOO discouraged. So the positive updates can mean so much! There is light at the end of the tunnel???? right???

  12. Kids and Lyme Disease article - NY

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks. I figured it would be buried in the back of the paper, so to have lead story on the cover, was astonishing. But honestly, as we all feel, wish "we" didn't have to be in the paper at all! And yes, it's amazing how they just wrap it up so easily but better for readers I guess. Much easier to understand. At least they got the 7% figure in there about the rash, I kept pounding away at that point with her.

     

    There are some associations that do great jobs of including info about children and Lyme but as we all have learned it takes a lot of searching to find stuff and figure things out. Can't imagine where we'd be without the parents from this forum! We found both docs and so many other recommendations that helped ease our short but intense journey so far. The "network" is truly in its infancy, nothing but a holding page. I'll be reaching out for volunteers or anyone who's interested in getting involved, as I certainly need everyone's input and knowledge (far more than mine.) On that note, feel free to let me know if you'd like to be involved somehow. (Kmom is already on board.)

     

     

    Your suggestions about ancedotes is SO right. And a great thing to include. Just simple things like tips on how to handle a vacation while in treatment would be awesome. (I learned from this forum about the Disney Guest Assistance pass and it saved us. After the vacation, I read someone suggesting not to change meds on vacation or before because of herxing. We did that and the last week of vacation was terrible! Now we know, it was a herx. :wacko:

     

    Thanks again.

     

     

    Nice job! You don't come off as neurotic at all. But don't you wish they gave it ten pages to talk about so much more, and how hard it was to figure out what was wrong? What gets figured out in one paragraph sums up such a long, exhausting, expensive journey!

     

    Glad you're starting a website focused on lyme kids. Considering that kids are one of the largest populations of lyme victims, surprisingly little is out there that talks about their needs and symptoms. I was wondering - while you need facts for the site, not anecdotes, is it worth starting a thread that talks about the things that things our kids experience? And how it's the same or different from other diseases (e.g. Pandas)?

  13. Kids and Lyme Disease article - NY

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks. I figured it would be buried in the back of the paper, so to have lead story on the cover, was astonishing. But honestly, as we all feel, wish "we" didn't have to be in the paper at all! And yes, it's amazing how they just wrap it up so easily but better for readers I guess. Much easier to understand. At least they got the 7% figure in there about the rash, I kept pounding away at that point with her.

     

    There are some associations that do great jobs of including info about children and Lyme but as we all have learned it takes a lot of searching to find stuff and figure things out. Can't imagine where we'd be without the parents from this forum! We found both docs and so many other recommendations that helped ease our short but intense journey so far. The "network" is truly in its infancy, nothing but a holding page. I'll be reaching out for volunteers or anyone who's interested in getting involved, as I certainly need everyone's input and knowledge (far more than mine.) On that note, feel free to let me know if you'd like to be involved somehow. (Kmom is already on board.)

     

     

    Your suggestions about ancedotes is SO right. And a great thing to include. Just simple things like tips on how to handle a vacation while in treatment would be awesome. (I learned from this forum about the Disney Guest Assistance pass and it saved us. After the vacation, I read someone suggesting not to change meds on vacation or before because of herxing. We did that and the last week of vacation was terrible! Now we know, it was a herx. :wacko:

     

    Thanks again.

     

     

    Nice job! You don't come off as neurotic at all. But don't you wish they gave it ten pages to talk about so much more, and how hard it was to figure out what was wrong? What gets figured out in one paragraph sums up such a long, exhausting, expensive journey!

     

    Glad you're starting a website focused on lyme kids. Considering that kids are one of the largest populations of lyme victims, surprisingly little is out there that talks about their needs and symptoms. I was wondering - while you need facts for the site, not anecdotes, is it worth starting a thread that talks about the things that things our kids experience? And how it's the same or different from other diseases (e.g. Pandas)?

  14. Kids and Lyme Disease article - NY

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks Kristie. Hoping to get your "story" done this weekend. Sorry I've been out of touch! One more paper in Ny is printing in a week, another 2 in western NY are hopefuls. Amazing how the reporters are SOOO astonished to hear our kids stories. They just don't have any idea and have never heard of the neuropsych stuff associated with Lyme. I explained PANDAS but could see the reporter was too confused to include both illnesses in the same article. So, for now, just focusing on Lyme is a challenge and getting them to include "our" information as opposed to the one-sided CDC stuff.

     

     

     

     

    )

    Darlene,

     

    The article looks awesome!!! Can't wait to share it! Way to go! BTW, if it helps to use my kids real names, we aren't opposed. We just made it more fun to make up names!

     

    Kristie

  15. Kids and Lyme Disease article - NY

    in PANS / PANDAS (Lyme included)

    Posted

    Hi there,

     

    Thought I would share an article that ran in upstate NY paper featuring my ds4, promoting awareness of Lyme. Front page, cover story! Thank goodness I didn't come across like a neurotic Lyme mom! And they actually included the 7% get a bulls-eye rash! .... not 70%. (Laura - I think Plattsburgh paper will be calling you. Times Union wanted a child closer to Albany). Hoping to see more articles featuring our very brave kids :)

     

    http://www.timesunion.com/default/article/Lyme-disease-Focus-on-a-shadowy-ailment-1376595.php

     

    Darlene

  16. help with herxing

    in PANS / PANDAS (Lyme included)

    Posted

    My ds4 only seems to have psych symptoms with herxing episodes. Guessing that's what they are. About 2 days after Tindamax, it's awful...whiny, irritable, impulsive (grabbing at everything like a 2 year old), unable to focus, emotional lability and some fatigue. He's so impatient and emotional, I can't imagine how he's going to do any summer activities, like T-ball starting this week! And yes, just when we seem to come out of the Tindamax episode, time to take another pill. So frustrating and feel bad that he can participate in these activities! Keep telling myself, yes, this IS lyme/bartonella. So hard not to second guess.

     

    darlene

  17. OCD worse by the week...

    in PANS / PANDAS (Lyme included)

    Posted

    Hi Laura. Big hugs. You've got to be exhausted from all this. I know every change is overwhelming watching and waiting for any reactions/symptoms. May not apply to your case, but Colin was TERRIBLE following tindamax for about 4 days. Rages, anger! Even woke up in the middle of the night, fuming angry over nothing! Dr. J cut his dose in half on weekends and it's definetly helped. Maybe cutting Tindamax back??

     

    darlene

  22. May is Lyme Disease Awareness Month

    in PANS / PANDAS (Lyme included)

    Posted

    Hi Everyone,

     

    May is Lyme awareness month. Several moms have agreed to have their children's stories told to various newspapers (in some cases, the kids names are changed to protect their privacy). We're getting some interest from papers in NY. And still working on getting more stories out from other moms who have contacted me. (if I haven't spoken to you yet, I haven't forgetten. We're working our way through the states!)

     

    But, if you're interested in having your child's story/situation shared to create awareness, please PM me. I'll be "pitching" the stories throughout the summer as well. We really need children from DE, Maine, NJ, NH, RI.

     

    Also, looking for stories where the children presented mainly with neuropsych symptoms/behavioral.

     

    Thanks and an early happy mother's day to all the moms who are working so hard to advocate for their kids!!!!

     

    darlene

  25. DH bitten by a tick today!

    in PANS / PANDAS (Lyme included)

    Posted

    This is such a timely post for me. My mom was bitten yesterday by a tick. Found it attached on the back of her leg. This is about the 4th tick attachment she's gotten from her backyard in upstate NY. She had a small red ring but the local doc said that's not the bulls-eye. Anyone have different rings appear after the bite?

     

    Mamma...how much was Igenex to test the tick? Anyone know about county testing? Who do you call. My Lyme child is always over in her yard, so I'm concerned and would like to know if Lyme ticks are around! (although I think I'll have them in snowpants all bundled up all summer!!)

     

    Did your doc recommend normal or high dose antibiotics following the bite?

     

    God...these darn little things!!!

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